On the day her doctor phoned to tell her she had cancer, Isabel Call scribbled notes through her tears, stunned by news of a monstrous illness that suddenly was threatening her life.
Before long, the soft-spoken UC Davis graduate student would convert her notes into action.
After she hung up the phone, Call went to her computer and began researching the rare and potentially fatal malignant tumor, called a paraganglioma, that surgeons had carved out of her neck days earlier.
She began delving into possible therapies. Then she mounted a remarkable campaign to get the treatment she wanted, over her insurance company's objections.
Call, 28, won her fight for coverage and is now in Houston getting proton radiation beam therapy, even though UC's student health insurer, Anthem Blue Cross, deems the treatment "investigational" and unproven.
Her campaign, which within days mobilized thousands of people across the country who protested the insurance company's denial of coverage, illustrates new ways that patients with serious illnesses are pushing back against a health care system that is under unprecedented pressure to provide the best, most sophisticated care while reining in costs.
Thanks to the power of the Internet to educate patients and help them organize to put pressure on insurers and hospitals, more people are winning their appeals for "innovative" or unproven treatments, said Arthur Caplan, professor of medical ethics at the University of Pennsylvania. But in a society in which basic health care is unaffordable to tens of millions of Americans, he questioned whether that is necessarily a good thing.
"Morally, it's hard to get completely outraged over the plight of those who cannot get an experimental drug or therapy when so many cannot get basic, proven medical care," said Caplan. "The fact that uninsured and poorly insured Americans cannot get access to everyday dental care, oral surgery, mental health care, prenatal visits, drug rehab and a slew of lifesaving medicines is more ethically outrageous."
Few, if any, countries "routinely pay for experimental, innovative or unapproved medicines or treatments as part of their health insurance," Caplan said. Where should America draw the line?
"Who pays for innovative care?" he asked. "When? How much, and for how long?"
Call, a petite Tennessee native who is pursuing a doctorate in agricultural and resource economics, bumped up against those issues in March, after UC Davis surgeons removed a malignant tumor attached to her carotid artery on the left side of her neck. The tumor is so rare, she learned, that few doctors have ever seen one, and no standard treatment exists.
Doctors talked to her about further surgery to remove surrounding tissue in her neck. The surgery, they said, might eradicate the cancer but likely would destroy key nerves and could rob her of the ability to speak and swallow. They also recommended standard radiation, which she learned could result in permanent neck stiffness, damage to her brain stem and spinal cord, and destruction of her salivary glands.
Neither treatment appealed to Call. Instead, she decided to pursue proton beam therapy, which doctors at M.D. Anderson Cancer Center in Houston were successfully using against various cancers.
In contrast to conventional radiation, Call's UC Davis radiation oncologist explained, proton therapy can be more finely delivered to tumor cells. So the therapy would cause far less damage to healthy tissues around the tumor, sparing Call potentially lifelong disability.
Filled with hope, Call boarded a plane to Texas.
Orchestrating an appeal
The proton therapy, Call learned, would cost about $160,000, or about $100,000 more than conventional radiation treatment.
The M.D. Anderson doctors said in writing that they were confident the therapy was the best course for Call. But they could offer no clinical proof that it would work against malignant paraganglioma, which is so rare that only a handful of studies have been conducted on it around the world.
Because of that lack of evidence, Anthem recommended that the University of California deny coverage. Call filed a written appeal, arguing among other things that "because of the rarity of this cancer there have never been and will never be" enough cases for a study of the benefits of different radiation therapies.
After receiving a second denial, she briefly considered giving up.
"I thought, 'Maybe they're right,' she recalled, sitting in the kitchen of the home she shares with other students, a pink surgical scar slashing across her neck.
But she decided to take her case in a different direction.
In late May, with help from her boyfriend, Chris Ganson, and a couple of friends, she organized an online signature campaign to pressure UC which contracts with Anthem for student health insurance to approve the treatment. Within a few days, more than 7,500 people had signed on, triggering a barrage of emails to UC's chief financial officer, Peter Taylor, and chief risk officer, Grace Crickette.
At the same time, Call and Ganson contacted Laurie Todd, a Washington state writer who calls herself "the Insurance Warrior," for help in crafting a more in-depth and urgent appeal. Call sent that appeal to a host of people, including UC President Mark Yudof and Anthem President Pam Kehaly.
UC Davis students got wind of Call's story and started organizing a campus rally using Facebook and other social media. Day by day, Call felt the tide turning in her favor.
Last week, following a meeting with an associate dean and phone conversations with Anthem officials, she learned her request for proton beam radiation treatment had been granted.
The battle ahead
It is unclear whether it was Anthem or UC officials who had the final word in the case.
In an emailed statement, UC spokesman Steve Montiel said, "The director of the UC student health insurance plan personally advocated for additional review by Anthem of Isabel Call's request for benefits not because of any pressure, but because of concern for the student.
"She and others at the UC Office of the President are very pleased that Anthem determined that the requested treatment is appropriate in this situation. We send our most sincere wishes to Ms. Call for a full recovery."
Anthem declined to discuss the case with The Bee, citing privacy issues. But in a letter to Call, Anthem said evaluators were making an exception. "The decision to approve coverage does not mean that we endorse the safety or effectiveness of this service," the letter read.
Patients have been fighting for the right to "investigational" therapies for decades, and often win appeals, said Susan Pisano, a spokeswoman for America's Health Insurance Plans. She said insurers are wary of such therapies not because of cost but because they may be unsafe.
"Health care plans pay for expensive therapies every day when the evidence shows that they are safe and effective," Pisano said.
But Caplan is convinced that, even in the Internet age, only the savviest consumers can pull off a successful appeal. "Patients are getting better at shaming payers into coverage, but it's only those who are educated and connected who get it done," he said. "Most do not know how to take on an insurance company."
Call was shocked, she said, at the effort required to orchestrate her own appeal.
"I had to put everything else aside," she said, including work on her doctoral thesis about community forest management in Kenya.
Ganson, her boyfriend, said Call and her friends "spent 14 and 16 hours some days trying to understand this and work our way through it. I'm guessing 97 percent of the population would not be able to navigate it."
Having won her insurance battle, Call is now focusing on fighting her cancer. Each weekday for the next month and a half, she will lie on a gurney wearing a custom-fitted mask while a beam of radiation shines down on her neck.
Alone in Houston, Call said, she plans to do plenty of reading, meditating and focusing on "my healthy cells."
"I've started praying, too," she said, preparing herself for whatever the future might bring.